The Transplant Chronicles

Instead of trying to both remember and explain transplant, my brother thought it might be a good idea to move both the FaceBook Updates and pictures to the blog. This way, for those who don't have FB- or those who may have missed part of the journey, you can easily find a record to such events. (Instead of digging through my FB Feed. Trust me- its tedious) 

As a warning, this is FAR longer than my typical "Short and Precise" Posts! That being said-

Let's begin the recap!

Transplant Day -7

This simply means it is seven days until I will receive my beautiful Stem Cells back into my body. 

PICC Line was placed, making a grand total of two catheters entering the top of my heart through the vena cava. My heart was racing a bit, so it must be excited about all the attention it is getting! 

I'll try to post updates as frequently as possible. 

Much love! 

‪#‎CalebsCrew‬  ‪#‎TransplantTime

Transplant Day -5 

Since yesterday I have been receiving a high dose chemotherapy called Busulfan every six hours for a total of 5 days. It's pretty intense and extremely powerful. (It's totally killing my bone marrow soooo yah it's strong)

I'm awake now, but my brain is all fuzzy- thanks to the Benadryl. I just continue to knock myself out. 

Thanks for all the cards, messages, prayers, and love! 

Much love!

(PS- the blanket I have in the picture was from my Ewings Sarcoma hero, Sarah Kait. Her name is also on the shirt)

Transplant Day -3
The high dose chemo is slowly breaking me down. I'm thankfully not struggling with too much nausea... Knocking myself out seems to be my favorite option. 

Please pray for me as I fight the coming side effects. By day 0 (Transplant day), the side effects will be in full swing. Lots of fun ahead. 

Thank you for your prayers, love, and support.

#CalebsCrew #TransplantTakedown

Day 0: Transplant Day!!

Thank you all for the prayers today. 

My cells were infused at 11 AM! They are now furiously making their way to my bone marrow. Hopefully within 3 weeks they will engraft. 

Mucositis has set in, making it a rather long three weeks ahead. Please pray that the drugs do their job knocking me out and keeping the pain in control.

Much love and thanks!

(Oncology Team and my beautiful bag of Stem Cells!)

(I wore this shirt on purpose- to me, "Believe in Heroes" means so much on a Pediatric Oncology Floor!)

Transplant Day +1 

My counts have yet to zero out. Because of this, my Mucositis is being held at bay and I'm doing well. Thankful for a nice "Calm before the Storm" 

Very thankful to have my Princess with me! Today marks her 6th Year Diaversary. Though are lives have been overrun by Cancer, Type One Diabetes is still alive. 

Thankful to be together!

Transplant Day +4

From Ben: The effects of chemo are in full force, and Caleb has been very sick. He is starting TPN (IV nutrition) tonight, and has been throwing up and nauseous due to mucositis. 

The team is working hard to adjust his meds and bring relief, but for now Caleb is in possibly the worst phase of the transplant procedure. He could potentially be this sick for a week or more. This is also a serious time because colitis and other very bad complications are more likely. 

Would you please take some time to pray for Caleb? He asked me to send out this update so that you, his friends, can know where his and how things are going.Thank you!

Transplant Day +5

From Ben: Caleb continues fight the hardest challenges of his transplant. The worst side effects have morphed into a continual cycle of throat and mouth pain, nausea and vomiting, and itchiness from all the medicine. All three work off each other, preventing sleep and causing a lot of pain. 

Caleb asked me to write again so his friends can be praying for him today. His medicine isn't able to relieve the pain or nausea to much less than 8/10. In rounds this morning the doctors said they expect his counts to rebound around days +8-11, and today is +5. If we could commit to praying for Caleb over the next four days or so, he needs God's grace and strength very much during this time. Thank you!

Transplant Day +6

From Ben:

Sounds. 

Hospitals are like a living organism. The daily rhythm rises and falls steadily, with motion and life created by hundreds of people coming, going, and doing. Right now, though, sound is significant. Sitting here next to Caleb, peaceful sounds fill the room. He has five pumps running IV fluids now. Each one clicks intermittently. One ticks steadily every second. Another has three fast ticks every ten seconds or so. Caleb is on oxygen, which humidified by bubbling through a small water container. These sounds are quiet, continuous, relaxing. Caleb's steady, sleeping breaths are also welcome sound. After days of discomfort, peaceful rest is a gift. 

Tomorrow will be a new day. New people. New conversations. New sounds. Until then, thank you for following Caleb's transplant updates, and most of all thank you for holding him up with your prayers.

Transplant Day +7

From Mom:

Caleb is still not comfortable. Running a fever. Can't swallow. Had a breathing treatment that ignited the mucositis this evening which caused him to begin throwing up which caused him to feel like he was suffocating with mucus. He is afraid to sleep for fear of not being able to breathe. The team is on board every 15 minutes checking vitals. Leads on heart, oxygen, blood pressure, pulse all night. Platelets were given to stop the bleeding from nose and mouth. It stopped. He is receiving maximum pain meds and still at a 7-8. This is given solely by the anesthesiologist it is so strong. 

This morning's update:

We just finished rounding with team. They are sure he will begin feeling better in a few days. He will stay the same at this point until his counts start rising. They are doing everything they can to make him comfortable....but it is imited. NP said he will probably get more than one fever. His fever is down this morning since they added IV Tylenol. He smiles when nurses come in and holds their hands and tells them thank you. He is so dear to all of them here. They are all fighting for him....truly. 

(Hey! It's me. My Mom wrote two posts this day so I figured I would post both. Just wanted to give a head's up in case this seemed confusing.)

What does courage look like?  
Facing your greatest fears with a smile.
Caring for those who are caring for you. 
Accepting God's will moment by moment.

This courage that is shown in our boy's life is because of his love for others and his love for God. This can't be manufactured or produced by our will... This is the result of a living relationship with God. 

We can't believe it has already been a week since Caleb's transplant. When you are in times of crisis, time is irrelevant. The days run together into weeks.

We are right where the team anticipated we would be, but truly nothing prepares you for seeing your child in this much pain. To see the side effects of chemo, transplant, fever, exhaustion.... takes your breath away. I have to remind myself to breath right along with him. It's like if you hold your breath, maybe you will wake up, smile, and realize it was a bad dream.  

But this is not a nightmare for him... this is his reality. He is fighting every single moment of consciousness. When he briefly falls asleep, his dear body relaxes, and then jump starts again, because of pain and lack of deep breaths.

He is running another fever tonight. They are running multiple tests right now to rule out infection.

Today I had the privilege of holding and praying with a precious mom who had just received devastating news. Mutual pain bonds us together with strangers.... not strangers but "unmet friends." This is sacred ground the Lord has called our family to. We are humbled by our own weakness, and strengthened by the courage we see in Caleb.

We are encouraged by the prayers of so many around the world. I wish we could thank you all in person. Heaven will allow us the privilege to do that. Thank you from each one of us. May the Lord continue to bless this amazing community of love.

Transplant Day +11

Caleb has been through an incredible week. For seven endless days, he has been more sick than anything we have ever seen. A mouth and throat completely covered in sores, fevers, vomiting, nausea, little sleep, and unrelenting pain stretched the hours and days into a timeless blur that can't compare to anything in normal life. The doctors and nurses applied their exceptional effort and compassion to relieve Caleb's suffering. But ultimately, very little relieved the pain he faced. He has been on numerous (up to fifteen simultaneously) IVs to reduce nausea, pain, and fevers. 

Thankfully, Caleb has started to turn in a good direction. His ANC and white blood cell counts are rebounding, and his previously-frozen stem cells are now engrafting and repairing his body. Finishing transplant is still a long process - he will be in isolation for a while still. Caleb's throat and mouth are still very raw and sore and will not recover for months. His body will be susceptible to simple infections for up to six months, and he will continue to be very tired and weak from the past twelve months of chemotherapy and radiation.

We want to thank you deeply from our hearts for praying for Caleb. While we rejoice that he has made it through this dreaded phase of the stem cell transplant, we recognize that truly beating cancer will be determined over the next year and ultimately five years. Through that process we would be humbled by your continuing prayer for his complete recovery. But for now, we are so grateful for your prayers and for God's grace throughout these past weeks

My favorite memory of today is Caleb's relief to be through the worst of this transplant. So often we've been told how bad this transplant was going to be, and now to be finishing the darkness of pain is bringing hope, joy, excitement, and forward momentum. If anyone has fought and worked to enjoy a little hope through this past year, it has been Caleb; but an unrelenting treatment schedule made these concluding chapters impossible to anticipate. To see a smile on his face and hear the hope in his words is the most wonderful gift anyone could enjoy.

Transplant Day +14

Hello my friends!!!

Sorry for all the posts. Last week was worst out of three so far. My Oncology Doctors said it one of most severe mucositis cases they have seen here. I found that interesting. 

Plan is that within a 1 day, TPN stops. It is IV nutrition that has been feeding me for 2.5 weeks. I've been severely drugged with 3 narcotics that will completely stop on Friday. Also on Friday Double Lumen PICC comes out and I'm somewhat human! On Monday I go home and face 6 months of recovery. (Isolation and restricted foods) 

Come this summer, I Start online Nursing prerequisites. This fall I will be returning to MBU to return to nursing school and actually start a few Junior Nursing classes. Thought it still may take three years I will finally finish Nursing and hopefully return to Pediatric Oncology to be a nurse. 

Following this year of chemotherapy, 41 rounds of radiation, and this transplant- I'm exhausted and ready to be done! 

Thank you for all the prayers and support! Couldn't have done it without you! Also thanks to family for updating during the depths of this fight!

Much love,

‪#‎CalebsCrew‬ ‪#‎TransplantTakedown‬

(Enjoyed a lovely stroll with my ever-so-loving nurse, Emily!)

Transplant Day +20

From Ben: Caleb is still in the hospital, and beginning day 27 overall (+20 from transplant). We had hoped for discharge Monday, but the doctors plan to keep him for a while. Caleb's platelet counts are still low and he is having pain in his abdomen. The cause of these problems is unclear, so Caleb has been going through numerous scans and tests to figure out a possible cause. Until the doctors are satisfied with an answer and can provide a solution, Caleb will need to stay here.

Please pray for Caleb today! He has an upcoming MRI that is expected to help find the problem. Scans are fairly normal now, but they are much harder when you feel nauseous, tired, and in pain. Also challenging is the expectation to be eating regularly although he still has nausea. Please pray that Caleb can meet some of these requirements and make it to discharge. While we have to find answers, it also seems that going home would provide great comfort, rest, and recovery that are hard to achieve in the hospital. Thank you!

Transplant Day +23

This Post was from my Mom shortly after a rough reaction to IVIG. This drug was given to treat ITP. In simple terms, my platelets were dangerously low and transfusions were doing nothing. They infused the IVIG to treat the low platelets- however, the reaction to it was fairly severe.

Suffering.

What lessons can we learn form this unwelcome friend? As I watched my dearest husband leave the hospital this evening (after working a long day), I saw the weariness in his steps- i saw the result of suffering. For in this battle we, as in Caleb's Crew, are enduring suffering.

The greatest results are obvious in our beloved son. He has suffered all day. The side effects of the IVIG, that we hoped would not come, hit full force this afternoon. A high fever, vomiting, unrelenting head pain. It was so bad they ordered a CT Scan of his brain this evening. He is now on round the clock morphine and anti-nausea meds. Just when we thought we were through the worst, our old friend showed up again. Our son has suffered beyond belief or understanding.

 Is this not enough, Lord? Can he not catch his breath? 

"Suffering and love go hand in hand." When you love someone, their suffering is yours. Love cannot be absent when someone you love is suffering. Words fall to the ground, if love doesn't show up in times of suffering... and then I got it.

Lord, our suffering is yours also. You are here in this room bearing our sorrow with us. We are not alone. You love our darling son and his suffering is yours. Your words comfort us. "Call unto me all ye who are heavy laden and I will give you REST." Rest is what the suffering soul craves. Call ... call... call... we are calling this night dear Lord for our precious son. Rest... Rest... Rest... Your promise to the weary soul.

Thank you to our community of Caleb's Crew who continue to call on our behalf. For those of you who wake during the night to pray for us, thank you! For those who cheer us and brighten our steps, thank you! For the unsung heroes, who have suffered right alongside of us, thank you!

Transplant Day +25

Hey everyone!

This is day +25 from transplant. (I've been here 32 days) I'm slowly recovering, but feel totally in a blur. The longer I'm locked back in this hallway- the less human I feel. Let's just say I'm extremely ready to be done and go home! 

A friend of mine posted this picture and it made me realize just how much awareness is needed for pediatric cancers! 

‪#‎MarchMadness‬ ‪#‎Morethan4‬ ‪#‎ChildhoodCancer‬

Transplant Day +26

We Finally Get to go HOME!!!!

So, after the LONGest post ever in this blog's history- I hope this can help you understand a good part of what transplant entailed. Though this doesn't have all of the crazy stories- such as proposing to one of my nurses, holding nurses hands, telling my oldest brother to go on a "Singles Cruise" with one of my nurses . . . etc. (I was on Fentanyl and Ketamine- two legitimate reasons for such actions!) I think it at least gives a decent generalization to the journey! ;)

I could never say "Thank You" enough to each one of you who prayed, visited, encouraged, texted, messaged, sent balloons, sent cards, or supported my family and I during this time! You truly were the Crew that helped carry us through this major step in treatment!!!

Love to all!

(Again, I'm sorry for the incredible length! I'm not trying to suck you into re-reading these updates, however, I have a lot of followers who are not friends on FaceBook.)